I know. Chin up though. I mean. A concrete diagnosis is GOOD. I know you've already been through so much w/current cancer treatments but if this is leukemia then ................................ that can be treated too! And more importantly is curable in adults. It's rough but try to keep that in mind?

My biopsy (most PAINFUL thing I've ever experienced ... I do not recommend) was negative and it looks like my WBC is slowly coming back down. All other blood tests looked really good too! My hematologist/oncologist is going to monitor me again in 8-9 months just to make sure but otherwise she feels pretty confident about the situation.

She did inform me about some abnormality with my thyroid counts and a recent ultrasound had shown enlarged lymph nodes (again) in my neck. My endocrinologist doesn't seem too alarmed atm ... I guess which is good. He's pretty diligent at informing me if something looks off or worrisome. I haven't had the CAT scan yet. I think he ordered for it to be done sometime in May/June.

On a happier note, my chronic pain and fatigue has ebbed enough for me to enjoy basic activities again. Also, my hair has ceased to shed by the pound! I'm finally able to emit some level of confidence when out in public. I feel almost normal again ~ which is a small miracle in itself! My depression has also improved immensely these past few weeks. I certainly don't feel all doom & gloom like I was a couple of months ago! If this continues and all looks good from a remission standpoint, I am contemplating returning to work again on a part time basis.

Thanks for sticking with me Petopians! Happy Hunting!

Last edited by Niabi on Tue Apr 18, 2017 9:44 am, edited 1 time in total.

I almost never visit the off-topic forum, so I've somehow missed this thread. I read all of it though, and all I can say is that it must take an amazingly strong person to go through all you've been through. I'm so sorry it's been such a struggle, but thankfully it sounds like things are finally looking up. And you never have to apologize to us for anything! Keep working on getting better, and keep us posted!

I'll let you know a little secret ... not having a thyroid makes you feel crazy! I'm still not balanced on my medications but this is the closest I've been to feeling "normal" since the surgery.

The chronic pain and fatigue I'm experiencing hasn't improved any and getting my doctors to acknowledge that these are persistent, everyday symptoms has been challenging. Normally, most patients would/should feel better by now but I am completely bed-ridden on my worst days. I do have good days but it's kind of like my body is on an internal timer; the more I do the faster the timer runs down. I've been hesitant to return to work for this reason. I can't seem to keep up a normal pace (consistently) anymore, both physically and mentally. Disability doesn't want to pay up because they don't/won't acknowledge everything I've been through ... and am still going through ... to warrant the receival of benefits, so I'm waiting for a date to be set so I can appeal my case in court.

Last edited by Niabi on Fri Jun 30, 2017 1:56 pm, edited 1 time in total.

I'm not around here as much as I used to, but I'm very glad to hear there have been some good news! And if you haven't already encountered it, perhaps spoon theory can be helpful in explaining to people?

I had no idea of what Spoon Theory was before I became sick but am now all too familiar with the concept. I think it is important for everyone to understand this theory and imagine themselves living day-to-day like this, everyday, for the rest of their lives. It breaks my heart that so many people, myself included, are misjudged and misunderstood because of our invisible illnesses. Lazy, unmotivated, out-of-shape, anti-social, hypochondriac, liar, homebody, and insecure are among some of the words I've heard personally.

Last edited by Niabi on Wed Jun 21, 2017 8:36 am, edited 1 time in total.

Something still isn't right and we can't seem to figure out what it is

What we do know is that my lymph nodes have continued to grow since my update post back in April. My thyroglobulin (cancer marker) remains low which would indicate that the thryroid cancer is not returning but along with my enlarged lymph nodes, my white blood cell count again is pretty high. I haven't experienced any colds or flus which might affect these circumstances so that's not it. My bone marrow biopsy came back negative so that's not it either. This is sooo frustrating!

The next course of action is to have two biopsies done of the largest lymph nodes in my neck (I have one on each side). Hopefully, that can tell me what in the hell is going on here! I am pretty sure it's not thyroid cancer again but what the heck could it be ... I don't know ... a secondary cancer maybe? An infection caused by a burst cyst perhaps (I also have PCOS) or a malignant tumor hidden somewhere (yep, I also have NF1). Nothing surprises me anymore.

Yep yep. Being the special little snowflake that I am I can never be too cautious about my health now. Have to make those doctors earn their paychecks.

Just got back from visiting my primary doctor today. Needed x-rays of my back due to severe pain and muscles spasms so maybe that will tell me something too. Though I don't necessarily know if it's related.

Last edited by Niabi on Fri Jun 30, 2017 1:53 pm, edited 1 time in total.

Yesterday was my biopsy: 8 FNAs (Fine Needle Aspirations) and 4 Core Needles divided between both sides of my neck. Some of the samples are being sent to USC and the others will be processed by Kaiser. Lost quite a bit of blood in the process but otherwise, I'm doing ok. The results from Kaiser should come back in about 7 days, while the results from USC might take anywhere from 10-14 days.

X-ray results came back and show I have a condition called Diffuse Idiopathic Skeletal Hyperostosis in my upper lumbar region of the spine.

Basically what this means is that the ligaments connecting to my spine have calcified. The only treatment that has been recommended as of now is over-the-counter pain medication to be taken as needed. My pain is pretty bad as it is so my doctor also said she could refer me to a specialist that works with spinal rehabilitation.

My body is trying to kill me!

*** UPDATE 7/9/17 ***

On a more positive note, the biopsy results came back clean which means I am not suffering from a secondary cancer.

We still can't figure out why the lymph nodes are so big though and have continued to grow for so long. My Endocrinologist assured me that my back situation would have nothing to do with it. Still, we simply cannot ignore the fact that this is a serious issue that requires further investigation. I'm running out of conclusions as to what it could be but I am continuing to work with my team of doctors on the matter.

Just a few years ago, I was perfectly healthy and now I am this. Not very fair if you ask me (But then again, when has life ever been fair to those of us who most deserve it?). It wouldn't be so bad if I could at least work a little or enjoy some time playing WoW but the constant pain and fatigue (amongst other things) radiating through my body have made me utterly worthless. I am very grateful that I have such a supportive and understanding husband who does his best to take care of me.

Wow, mixed results there, Niabi. I guess the most important one is that you're still cancer free! I'm so happy to hear that

The calcifications around your spine must be awful. I had a neck/shoulder issue with calcifications in my neck vertebra which was really painful. One thing I found that helped was that I went to a physiotherapist who showed me some stretches to do at home that really did help alleviate the pain. It doesn't get rid of the cause, of course, but it allows your body to get around it a bit. I don't know for sure but maybe something like that would help with you.

It was very painful when it first struck but it's only minor compared to what you've been through! I only mentioned it in case some similar exercises/stretches may help with your pain as well.

I'm confident something like that will be very helpful.

My condition wasn't explained very well when I received the diagnosis so I had to do a bit of research of my own afterward. Physical therapy (and exercise in general) is something I am pursuing to help maintain flexibility and core strength as I get older. Diffuse Idiopathic Skeletal Hyperostosis, also known as Forestier's Disease, has no known cure, is progressive, and can lead to paralysis in the most severe of cases. I'm only 38 and still plan to live quite a while longer before I let any of this -- cancer, DISH, NF, etc. -- take me down completely.

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